That's true Nackapan! When I start the Pascoe pack I'll monitor and keep a note of any changes or improvements in symptoms. Be an interesting (and possibly valuable), exercise! Best wishes to you.
We are all different - why wouldn't we be ? - and so cannot say what will work for others. I began with EOD and after about two years of that, I found that I had improved sufficiently that reduction to allow for an extra injection-free day worked.
When I was unable to get the usual Rotexmedica and chose Pascoe instead, I adjusted my routine to allow for the additional B12 in the syringe. Instead of injecting every third day, I now inject every fourth. Which seems to have worked for me and is then less costly.
I do not stick rigidly to this routine - if I have been ill/overdoing it, I just have my next injection a day early.
I started out, as many of us do, with the aim of gradual reduction of injections, but have found that this does not work for me and I deteriorate. So have accepted that my current regime is my maintenance dose and no longer feel the need to attempt to alter this.
At one point during the two years of EOD, I felt I was getting nowhere - a lack of progress. By chance, I saw a senior ENT consultant about a saliva duct problem. He had read every word of my GP's report to him, and had a paper copy in the drawer next to him. He agreed with me that saliva duct strictures would affect my ability to glean B12 from food at a very early stage of the process. He looked at my tongue, throat, felt my neck and studied the photos I had brought with me.
He then said "You clearly have a severe B12 deficiency. Do not give up with these injections. You are doing absolutely the right thing. Carry on with this and don't get disheartened. It will take a very long time, so you must be persistent."
So I am fairly certain that some people in the medical profession are far more familiar with B12 deficiency than others. I can also thank a GP and an ENT consultant for getting me to the stage where I had a quality of life again. Not the same one, granted, but still one worth pursuing.
Do not risk contamination. Use the whole syringe in one go and adjust your injecting regime. Nerve damage repair takes a long time - keep going and good luck.
And keep a copy of your diagnosis for "just in case".
Thank you for the lovely and informative reply Cheryclaire, much appreciated. Spot on that we are all different - unique really! Makes perfect sense doesn't it. Your comment about the ENT specialist was interesting, not only his attitude but what he concluded. I've had problems with saliva ducts over the years on and off, but my PA is definitely due to me not making the Intrinsic Factor and also adding Coeliac into the mix.
I'll carry on my usual EOD and monitor and yes, will log it so I can see any patterns emerging.
The ENT specialist kept me going through a stage where I was doubting whether I was getting anywhere. Like the much-beloved Dr Chandy, I believe his being initially from India gave him historically far greater experience in being able to identify B12 deficiency symptoms, and the confidence to do so without the need for further tests. Let's hope he also taught medical students what to look for !
Yes, saliva glands clogged up due to saliva duct strictures a problem - not the only problem though. It just prevents the haptocorrin (from saliva glands) providing a protective coating which gets the B12 in food through the acidic environment of the stomach intact. So not ideal !
It first came to light in Nando's - being very hungry, reading the menu .... by the time I had made a choice and dropped the menu, my face had gone totally hamster ! To the delight of my family seated around the table, luckily laughing too hard to take a photo of that occasion.
Absolutely right Narwhal10 - when I was penning my original post it was a classic moment of 'there's something else I need to say here....' and it was the concern of any contamination of the half dose sitting around for 24 hours. Best wishes to you Cariad x
Brain fog.....aah, yes, that's the name(!!), I have my best lucid moments in the shower and can put together the best lists and letters there, but once out they evaporate in the steam! I need one of those waterproof writing slate thingy with a waterproof pen so I can jot things down in the shower! I too have names for things in the house when I can't remember their proper names - best one is the extending feather cornice duster which is affectionately known as my 'oodle floodle'
Love the example of getting in the wrong car!! All power to our brains, eh!?!
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